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Thursday, July 23, 2015

The Waiting is the Hardest Part

Last week was the third time I got pulled away from a Brooklyn writing retreat. Last week I heard the worst reason I could have imagined. My daughter was told she had an osteosarcoma, which is primary bone cancer. She was told this on the phone from a stranger. After she hung up, she called her dad. After he hung up, he called me. "You need to come home." What now? It was getting to be a running joke. My Brooklyn friends began taking bets on how long it would take before I flew out of town. I never imagined the reason would be my daughter has cancer.

I'm asking him questions that he has no answers to, and all he keeps repeating is "You need to come home." Well, duh! Was that statement even necessary to utter, never mind three times? When I asked him why our daughter didn't call me, he said she didn't want to bother me. Seriously? For all the times I've been "bothered" by ridiculous crap, being told you have cancer doesn't rate a higher "bother" than those? After I hung up with him, I called my daughter.

After listening to my husband, I already know I will have to be the strong one. I feel guilty I'm not there to hug her as she spills. Fucking writing retreat. Once I get passed the initial shock stage, I ask how this all came to be. In a nutshell...she slipped on a rock in a creek a couple of weeks ago. She landed on her front leg. As the days went on, the leg bruised, became swollen, and a pretty big "lump" sprouted. In her case, lumps sprouting never seem to go away. Instead, their roots expand and strangle. When it got to the point where she could barely put pressure on that leg, she went to the Doctor's Express and they took x-rays. The staff sent her on her way.

The next day, a Thursday, she received a call from the center stating that the radiologist saw an osteosarcoma. My daughter first thought they said chondroma so she said, "I have a lot of those and there's really no treatment. Ok, thank you." The girl on the phone said, "No it's a sarcoma, and that means cancer. What doctor do you want us to send the report to?" I can only imagine what went through her head at that moment. She told them to send them to a local Orthopedist who she had seen one time before, last year. She set up an appointment for Monday. My husband got in the car on Friday, and I was back in town on Saturday.

Of course, the first thing one does when hearing such a diagnosis, is head to Google. First I searched about the cause, and treatment of osteosarcomas to brush up on them, then I searched for specialists in it. It's a given she would not be getting treatment in Roanoke. I think the rate of getting osteosarcoma is like .02% It's not a big name disease like breast or lung cancer. Most local orthopedics are schooled for sports injuries, not limb-saving cancer treatments. Still, the local ortho center could at least look at the x-rays and give us a second opinion.

On Monday we went to the Ortho, and the disc that the Doctor's Express gave us of the X-rays were unreadable, just thumbnails that couldn't open. The Ortho ordered more X-rays, and even though my daughter showed exactly where the problem was, they went by what was written on the chart, right knee, so that new set was no good either. More X-rays taken. Up to this point, we had only seen the PA, not the DR. After the X-rays they took us to see the Dr.

Without even looking at her leg, never mind examining it, he declared he didn't think it was a sarcoma. He then went into an explanation about how rare they are (yes, we know), and how they don't usually form on the leg (wrong, that's the most common place.) He then proceeded to zero in on her ankle which also showed a chondroma. He went into something about bones' positions causing her pain while walking. He also mentioned something about fixing that and straightening her leg at the same time. What...is...he...talking about? We are not here for that. We are here to talk about what a radiologist said is a sarcoma.

I asked him why I didn't see the tumor on the X-ray where she is in pain. His reply was, "I can't answer that." Huh? True, I was praying to Padre Pio all weekend to heal her, but does the little monk really work that fast??? I asked about her fatigue, "I can't answer that." I asked how come her blood pressure 154/100 was so high (another sign according to the cancer.org site) She usually has low blood pressure. His reply, "I can't answer that, I'm not that type of doctor." And I guess I understand...he's a specialist, not a general practitioner. I just thought since they are symptoms of osteosarcoma, he might have been familiar with them.

So I point blank ask him, "Can you definitely tell me if she does or does not have osteosarcoma?" "Probably not, but I'll order an MRI to be certain." Ok, good, that's all I want. That's all I need from him, even though it pissed me off that he didn't want to tell them to look for cancer, as he didn't want to, in too many words, "color their findings." I think it probably has more with insurance protocol as to what type of doctor can request an MRI for what type of illness. Whatever, just get it done. Might as well do as many tests as we can locally before heading out of town, if necessary, for treatment.

Believe me, there is nothing I want more than to believe that he's right and she "probably" doesn't have cancer, but I'm not betting on "probably." Roanoke has a piss poor rate of correct diagnosis and I know we need to take matters into our own hand. I wish that I had the powers to just call in the tests I want taken. Unfortunately I'm not a doctor and I need that intermediary. The ortho didn't say we should see her primary, nor did he order blood work. I guess he's not that type of doctor. So we went to the primary doctor, who took us a little more seriously, and ordered various tests. No, there is no "you got cancer" test, but there are numbers that can be looked at to see something is awry.

As of this writing, the blood results have not come back. The MRI has been scheduled in a week from now. For a disease that is so fast moving there sure is a lot of waiting, and the waiting is the hardest part.